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Friday, August 24, 2012

Our Happy Healthy Summer

It's been 7 weeks since Addie and I came back to Houston and I've just finished my first week back at school. I have been meaning to post for weeks and have just been caught up in playing with the babies and getting our house and life organized for me to go back to work. We had a wonderful summer together. Both babies have been healthy and happy. Aside from check up visits, we have had no hospital trips, no fevers, no dramas. We managed to have 2 sets of family pictures taken, we took the babies on their first family vacation and stayed in Galveston with my parents and Adam for a week, and we enjoyed lots of lazy mornings, eating Cinnamon rolls all in our PJs mid morning. We had these summer days that I had always imagined when I thought about being a teacher and having kids and enjoying our summer together. I also got a lot done in terms of seeing specialists and working on getting medicaid and organizing things so I have felt productive. We enjoyed time with my family and with friends, even working out the art of having friends over for dinner once the babies go down to sleep. After a crazy start to parenthood, Al and I both enjoyed a lot of days of feeling like a 'normal' family, all home together!

What I have to sit next to my twin?!?

Here Max can wear my bow today

Max loves Addie so much even when she tries to literally shove him out of her way

Addie is doing so extremely well. She continues to amaze me and all my expectations of life after transplant have been so far exceeded. She has been healthy and uncomplicated (from a transplant standpoint, at least!) She goes for weekly check ups and has a ball. I really think her hospital days are her favorite day of the week and why not? Everyone adores her and plays with her and there are new toys and things to explore there. She is still peeing like there is no tomorrow and all her labs look wonderful. In terms of her other medical challenges, we have been able to start to focus on some of these other concerns now that she is so much healthier. She is currently wearing a patch 4 hours a day to strengthen her weak eye. She is actually being really great about it. I had to work really hard the first week and keep her distracted but now she is very tolerant of it and rarely pulls it off. We expect her to need surgery to keep the eye straight but the patch is ensuring she does not lose vision in that eye. She is also SUPPOSED to be wearing hearing aids, or at least one hearing aid. We struggle to really get clear results in hearing tests but it seems her left ear is close to normal and her right ear has moderate hearing loss. Addie hates her hearing aids and pulls them off as fast as we can put them on. So we'd love prayers that we will figure out how to keep her hearing aids on her. Eating is still a struggle as Addie has no desire to eat so we are working with a food therapist for her and just hoping, waiting and praying for her appetite to form. In the meantime, her G tube is wonderful and keeps her full and hydrated and feeling great.

Developmentally Addie has done so well since her transplant. Despite her hearing loss, she is doing so much babbling and her language recognition is age appropriate according to her evaluations. She can point to about 5-10 body parts, she knows the names of all her toys, follows a lot of commands (when she feels like it) and knows the names of all the significant adults and dogs in her life. She does not say words reliably however. She has just started walking and is doing great, walking across a whole room, carrying objects while walking and turning corners without falling. When we left for CA just over three months ago she was barely cruising and not yet pulling up so we've been thrilled to see her doing some great catch up. She will continue to get physical and speech therapy and we know she'll be caught up before too long. Addie had a really rough first 18 months of life and spent so much time in a hospital bed. It definitely took its toll on her and her development but she is feeling really great now and making up for lost time.

Max is enjoying having his mom and sister back home. He has had a very stable summer, tolerating his dialysis really well. He does throw up A LOT- like 5 times a day or so. And he has to spend almost 17 hours connected to his machine so there are certainly things that make him uncomfortable and not as happy as we'd like. BUT, he has not had any complications or problems and for that we are most grateful. We are pursuing transplant for him because we do think it would open doors for more therapies, more activity, more inclusion in family activities and less vomiting and discomfort. I think it would make Max happier to be off dialysis. So, we would like to transplant him as soon as HE is ready. We know we are ready but what is most important is working out if he is strong enough to go through that big of a surgery and change. Our transplant team at Stanford will be evaluating Max and he will see a lot of specialists and have a lot of tests run so we can make sure we make the right decision for him. We are taking him to California in early November to meet the doctors and specialists. Addie needs to go then for her 6 month follow up and biopsy so we'll do both in one trip. And if Al and Max's cross match shows Al is a good match AND the team feels Max is ready for transplant, we will move forward and transplant him in December.

We hope and pray that this will all work out and that Max will have a kidney and be dialysis free by his 2nd birthday. But, we also know it may not be the right time yet for Max and I feel very much at peace that the right decision will end up being made for Max. When we thought Addie would transplant in January and then the hospital decided not to transplant her, I was absolutely devastated. It felt like this terrible set back. But what it ended up meaning was that Addie got to get stronger and we got to transplant her at Stanford. Which was totally the best place for her to be. And we had a wonderful time in Cali and made some friends that we love and are so grateful to have met. So, no regrets at all now that it didn't work out in Jan. So I am just taking that as a lesson as we go through the same process with Max. I believe he will get transplanted when and how it is best for him. God has a plan for Max and his transplant. I would love for it to be this December and we will take all the steps for that to happen. But if it it isn't, although we will be disappointed, we will trust God and trust our doctors that it would not have been best for Max and we will wait until we are confident that we can safely transplant him.

Developmentally, Max continues to make small but significant strides. He is gaining more controlled use of his arms and pushes his upper body up more and up. He still does not have head control and cannot make his head go to midline and that certainly makes other milestones like rolling or sitting difficult. We certainly hope that he'll make some big improvements after he does get the chance to transplant. However, we also know his developmental delays are very different to Addie's and have a neurological basis so we expect progress to continue to be slow and steady but present and important.

It has been such a tremendous struggle for me trying to come to terms with everything the doctors have told us about Max's brain and what we should expect. As you know if you've been reading this blog for a while, we have been told that Max will likely never walk or talk or have full cognitive functioning. I have found it difficult to know how to accept things and not be in denial... and yet hold on to the hope that we need to have. I think initially I just would oscillate between optimistic denial and defeated acceptance. But recently I am learning that acceptance and hope are not opposites and that I can live with both. I will never stop hoping for miracles for Max and I will never stop believing that he can exceeed everyone's expectations. But I have also accepted that he is likely to have significant disabilities for at least a very long time. I have accepted that he is not going to develop at any sort of normal rate and that as a result he is going to have some very special needs. And I know and expect all that and am okay with all that. It's not what we would have chosen for Max and it is certainly sad and upsetting BUT we're still okay and Max's life and our lives are still going to be happy. I hope Max improves but I don't NEED him to. We will enjoy our life with Max even if he makes no developmental progress. In fact when we were having a fun discussion with my parents the other day about taking the kids to Disney World one day, someone made a random comment about Max being in a wheelchair and we all smiled and continued discussing. A few months ago it would have made us all so sad to think that Max would be in a wheelchair and not running around with Addie. We would have avoided even talking about the future and trips because of how sad that idea was. But not now. We're realizing now that Max will be there, smiling away at all the characters and loving his time with us. He will be happy. And so therefore so will we. Max's disabilities haven't meant saying goodbye to any of our dreams or plans. They just mean knowing they may look a little bit different.

So yeah, that's life lately with us! I will keep trying to post updates as we have transplant news for Max as well as general updates. We really appreciate the interest in our babies and all the support and friendship.

1 comment:

You don't know me, but my wife and I have been reading your blog and we too have a child with CNS. Preston was born 5 weeks early and gets albumin/lasix Monday/Wednesday/Friday. He is also a patient at Lucile Packard.

Thank you for sharing your experiences with us. Every time my wife Vici and I read your blog we feel less isolated and rejuvenated (especially seeing your kids pictures).

Who knows, we might just see you at Lucile Packard in the next couple of months with Preston (hopefully) started the dialysis and Max (hopefully) getting the transplant. Please feel free to google my sons name to find my wife's blog. Preston Miranda.Thanks

About Me

I am the proud mom of two very special children. My babies were born 9 weeks early with a rare genetic kidney condition that required 8 months in the NICU and over a year of dialysis. I donated my kidney to my daughter when she was 17 months old and my husband donated his kidney to our son when he was 2 years old. We are living life as a one kidney family and loving life without dialysis. At 3 the kids each have their own challenges. Addie has moderate hearing loss and is learning to talk but otherwise as healthy and happy as can be! Max experienced traumatic brain injury around birth and is living with a severe form of cerebral palsy. He has lots of lingering health issues but his amazing smiles are infectious and he is a happy loved little boy. This blog chronicles my life as their mom.